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Isabella was born in Denver in 2006. To us, she was perfect. Soon after birth, Isabella tried to nurse, but could not latch on. We found out that Isabella had been born with a large U-shaped cleft palate. We bonded with Isabella right away. After some trial and error, we learned the art of feeding a baby with a cleft palate and what bottle Isabella preferred. Two days later, Isabella came home from the hospital.
Diagnosed and treated for life-threatening reflux as a newborn
After a few days, we realized something was wrong. After each feeding, if laid her down in her bassinet, baby Isabella would hold her breath for a very long time, even turning blue-grey, her little chest heaving oddly.
Doctors diagnosed Isabella with a life-threatening reflux disease. She had holes in her heart, central and obstructive apnea and a small brain bleed. During a test at the hospital, we watched a video showing milk travel up from her stomach and down into her lungs. At two weeks old, Isabella had an operation called nissen fundoplication to treat the reflux. Life with this newborn was complicated, but soon she was eating and breathing easier.
Out of the woods, attention turned to closing her cleft palate
When Isabella’s life was out of danger, we sought treatment for her cleft palate. We met with a genetic counselor at Children’s Hospital Colorado and Isabella received her first set of ear tubes due to moderate hearing loss, which is typical for cleft kids when liquid fills the ear canal. We also selected Dr. Gregory Allen from the Cleft Lip and Palate Clinic to perform Isabella’s cleft repair surgery.
Isabella had cleft palate surgery when she was 13 months old. We delayed the palate surgery to give Isabella time to grow bigger. The surgery went well, but it would not be her last.
After cleft palate surgery, the quiet baby started to babble
Together, with significantly improved hearing due to the new set of ear tubes, the cleft surgery opened a new world to Isabella. She slowly started to babble. That was new to us, as Isabella had always been a relatively quiet baby. A speech therapist visited us at home to teach Isabella sounds and pressure consonants slowly became part of her speech.
Isabella braved four more surgeries to help her speech
After the cleft repair, life settled into routines. Specialists evaluated Isabella’s ear tubes and hearing twice a year at Children’s Colorado and we visited the Cleft Lip and Palate Clinic once a year. Our confidence in the team grew as we saw the same doctor and team yearly; we knew that if anything were amiss, Isabella would receive proper care. The team’s knowledge was indispensable. We learned what steps to take with Isabella’s teeth when she needed braces and when to see a specialist for additional health concerns.
Eventually, Isabella needed four additional speech improvement surgeries to help her communicate clearly and regulate the tone of her voice. This process took three years. Brave Isabella walked to every operation unaided, only holding our hands. She would greet her favorite doctor and hope for the best.
Today Isabella’s speech is clear and her voice is beautiful
Today Isabella is a typical, confident, soon-to-be fourth grader with braces who loves to sing and read aloud. Isabella is eager to share her story, and this year she attended Cleft Camp in Breckenridge, Colorado for the first time. There she enjoyed meeting other children with similar experiences.
As the only family member afflicted with cleft, Cleft Camp was special and ‘just for her’, just like the cleft palate experiences have been mostly hers to bear. Overall, Isabella’s cleft palate path has been more encompassing than we ever knew in the beginning. Receiving coordinated care from the Cleft Palate Clinic has been the key to her success.